In Between: Where Do We Go From Here?

December 10, 2013 · 12 comments

in The Girl & Cerebral Palsy

Before this month is out, Sarah Kate will turn eleven years old.

We’ve officially reached the tween years, and while I know there’s a lot of growing up left to do, there’s no denying the fact she’s on the downhill to adulthood. Her body is changing, as is her attitude, and suddenly all of those concerns I had when she was small are no longer vague “somedays” but waiting just around the corner.

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Many of those fears I had have subsided.

Sarah Kate has never once, to my knowledge, been bullied or mocked because of her disability. She has been able to participate in sports, has done well in school, and seems completely comfortable in her own skin (while I, at almost 44, analyze and criticize every wrinkle and alleged fat pocket and care entirely too much about the opinions of other people).

But those vague concerns have been replaced with specific ones.

Rapid growth this fall has wreaked havoc on Sarah Kate’s legs. She’s faced long plateaus before when she made no progress, but she’s never regressed. Looking through some photos last week, I chanced on one from a couple of years ago. She was standing up, playing the Wii, and her legs – and her shoulders and her core – were more upright and straight than I’ve seen them in months. It was disheartening.

I’m worried that she’s going to regress – permanently.

I try not to think about it, putting my efforts instead into nagging Sarah Kate about stretching and trying to figure out the best way to incorporate strength and flexibility into her life, now that she’s not a little kid anymore. I wonder whether it’s time to consider switching her to a physical therapist who works with adults, or a personal trainer, in order to begin her transition into caring for her own self. She’s only a fifth grader, but eventually she’s going to have to manage her own care and I’m pretty sure that a Little Tikes basketball goal won’t be a part of it like it has been for the last decade.

She’s a tween in more ways than one.

Middle school is also looming large in my mind. Fortunately, she gets a reprieve until seventh grade, unlike in many school systems, but beginning next year she’ll change classes – a “trial run” for middle school – and she won’t be able to store items in her homeroom desk like she’s done in years past. She already struggles to carry her backpack into school – we recently switched to a messenger-style bag, which is better but not ideal – and it’s only going to get worse from here.

How will she manage to navigate crowded hallways and lockers with such poor balance – especially when she’s one of the smallest kids in her class?

Assuming she can make it through the halls without falling, can she make it on time to class? Even if she can (barely), how much social interaction will she miss out on by taking that extra time? Of course, that might be a good thing, rather than a bad thing, but it’s still a Thing. The struggles we’re already facing, and the changes I know are coming soon make me worry about potential surgeries we had hoped to avoid, and to begin researching service dogs for people with spastic forms of cerebral palsy.

It’s the dawn of a new day, and I don’t know quite where to go from here.

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{ 12 comments… read them below or add one }

k December 10, 2013 at 9:32 am

So much to think and worry about. On a practical note, have you looked at the rolling backpacks for school? They’re sort of all the rage around here and I wonder if that would help SK moving from class to class?

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Andi December 10, 2013 at 9:38 am

We’ve considered that, and we may end up doing it at some point, but she has a rolling overnight bag already and seems to get tripped up by it.

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Carrie December 10, 2013 at 11:22 am

A way to eliminate one worry (if she’s got a 504)… 2 sets of books, one for home & one to stay in the classroom. All she’ll have to worry about is notebooks & folders.

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Andi December 12, 2013 at 1:31 pm

It looks like we’re going to get lucky: the school system is going digital and every kid in her school will be getting a MacBook Air in mid-January. The program has already been piloted in the upper grades, and as I understand it, books will be no more. I use a MBA myself, and they are incredibly light.

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Kathryn December 10, 2013 at 2:14 pm

I know she has a 504 plan, so that can help w/ the middle school transition, maybe she can get extra time to get to classes, or(I’m not sure what the rule is) get permission to carry her bag.

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thara December 11, 2013 at 2:25 am

Kathryn she may not have a 504 you dont know that and they may not give them to students who have physical disabilities.

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Andi December 12, 2013 at 1:35 pm

Sarah Kate does have a 504 plan – she transitioned out of an IEP to a 504 about three years ago. I know not everyone would agree with our approach, but we’ve always tried to request the minimum level of support/accommodations for her. Our reasoning is that the world may not always be accommodating, and it’s better for her to learn how to navigate that world now while she’s under our roof and somewhat protected.

Of course, if a risk of harm exists, we certainly ask (like having a wheelchair available at school – she doesn’t need it on a daily basis, but if there’s a fire she needs a way to get out of the building quickly).

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Timothy December 11, 2013 at 8:59 pm

I was also going to mention the 2 sets of books; in fact, I think that should be standard in middle school, not just for those who may have special needs. Carrying heavy book bags is so bad for soft, still forming bones! Each students should be issued a set of text books to have at home during the school year and then there be a set in the classroom.

I am pretty sure, depending on her needs, they will let her leave each class a couple minutes early to give her a head start before the hallways are saturated.

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Andi December 12, 2013 at 1:36 pm

I agree, Timothy!

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N December 11, 2013 at 10:32 pm

When I was in middle (and high school), my accommodations included 2 sets of books, permission to leave class 5 minutes early to navigate the hallways, notification of fire drills, and an elevator key (if your school has one). I never really used any of these except the 2 sets of books because I didn’t want to be seen as “different” by my classmates, but they were in my 504 plan. Most teachers were pretty understanding with attendance- it was only when I got a substitute teacher that I’d be called down to the AP’s office for being tardy. My school was huge, and the halls were pretty crazy, but for the most part I managed to get around okay.

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Andi December 12, 2013 at 1:38 pm

Thanks for the tips – I’m so thrilled with all of the great advice I’ve been getting since I wrote the post. Interesting about the substitutes – I wonder if, when Sarah Kate reaches that point, if I should request a “permanent pass” for her to carry in her pack. Maybe a laminated card signed by admin for her to show in cases like those? It’s a tiny thing, but might be worth it.

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Melissa January 15, 2014 at 9:06 pm

What I did for my son who has CP was in his IEP he had a set of books that came home and a book that stayed in each class. This way he did not have to carry books from class to class or to home. My son had a bottom locker that in High school he never uses. We transferred him to another high school that is one floor. The school he should have gone to has 5 buildings with at least 4 floors each. Again in his IEP says he can leave early and arrive late.

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